A WITNESS TO GRIEF

A Witness to Grief – By Jane

‘I had no idea how to talk to the bereaved. Until then I’d mostly avoided those who’d lost loved ones. I didn’t know what to say so I said nothing. In a culture that’s distinctly uncomfortable with pain, this is a safe position for many people. We don’t like to look that kind of loss in the eye for fear it might swallow us.”

Fiona Hunter and Jude

So writes Jill Stark and the bereaved she is talking about is her oldest friend Fiona Hunter whose 5 year old son Jude died just three hours after being diagnosed with pulmonary hypertension just before Christmas 2011. Jill, is a journalist, and she was preparing to fly back from Australia just having received the news of the little boys death. On her way she found herself in the self help section of a bookshop searching for ways to support her friend and feeling at a complete loss as to how to respond to her friends grief. “My impotence was matched only by the abject futility of the titles – When bad things happen to good people, Beyond the broken Heart” It was she says “like trying to fight a firestorm with a watering can”.

And as I continued to read her article (Giving Grief a Voice) I was struck by the way that Jill was prepared to go that extra mile to try and make sense of something so senseless, so unthinkable. Something which also involved facing her own fears of talking openly about what is everyone’s worst nightmare, the death of a child.

And I know from the nightmare of Josh’s death that when a child dies everything is thrown up in the air – nothing is ever the same again. I will never ‘get over’ or ‘move on’ from Josh’s death, but some of my friends have reacted in ways that suggest they wished I could. Grief taps into emotions and feelings that I never knew existed either for me or my friends. Reading about what grief is like from the perspective of another bereaved parent’s friend, from someone who was, it seemed, prepared to face her own demons is therapeutic and comforting. Jill acknowledges her friends pain with an unabashed honesty. ‘Grief isn’t pretty and it’s rarely quiet. It can be a skin-scratching evisceration, that rattles through every nerve ending and rasps on each breathe. Denying it a voice isn’t healthy. And it’s an insult to those we’ve lost.’

Josh

One friend of mine admitted that for her it was scarey and uncomfortable to talk about Josh. She was afraid of upsetting us and deemed it probably safer to say nothing. I explained the ‘elephant in the room’ syndrome – when nobody talks about Josh it makes it so much harder for us to relax in social situations. Instead we put on a mask that says ‘I’m OK – please don’t bother yourself with my sadness’. This, it seems, only prolongs the silence. I know that to see someone grieving is not a comfortable sight. It’s unpredictable and raw and I use the mask to hide my pain. I’m sure that in the earlier stages of life after Josh, I must have seemed like an enigma to my friends. I’ve landed on a strange planet and they no longer recognize me. But I was seeing them differently as well.

In his new book ‘An Astronauts Guide to Life’, Chris Hadfield talks about what it was like to see the earth from the moon for the first time. He would, he said, never see the earth in the same way again. Grief colours your world differently and we are strange to others. But tiptoeing around the bereaved like they are aliens is not right.

Parents of Jude’s school friends hang their heads when they see his mother Fiona arriving in the playground. ‘I’ve gone from arranging play dates’ she says, ‘to a harbinger of doom, someone who was there just to remind them of their own mortality’. The fear of saying the wrong thing may well be a natural response when in the company of the bereaved, but it is not at all helpful. Grief needs to be spoken. ‘One of the hardest things in the aftermath of Jude’s death’ says Fiona, ‘was the feeling he was being erased. Some people would say anything to avoid talking about him …. (but) to mention his name doesn’t remind me that he died, it lets me know the people remember that he lived.’

Jude

I’m reminded of the early days of racism and disability awareness when instead of bravely addressing the discomfort felt whilst in the presence of black or disabled people there was an expectation that they themselves had to speak up to defend themselves and justify their existence. Since Josh died I have felt similarly isolated though I don’t think the prejudice is as overt, and it is important to say here that I am neither black nor disabled. On so many occasions I have longed for someone to speak out on our behalf, to meet us where we are rather than us having to educate or guide others around the new us.

As I wrote this article I thought I’d give it a reality test with one of the many close friends who supported us tirelessly with Josh’s funeral. Claire Schimmer told me ‘It’s probably unsurprising that we’re ill-equipped to deal with the consequences of an unexpected death in our own communities. We prefer our death to be Scandinavian noir where the murderer is always brought to justice in the end and we can watch the grief of the parent/spouse/child from a safe distance knowing that its actually only acting It’s difficult and confusing being with friends who are grieving, not just because of the lack of vocabulary but because, if we’re honest, one of the first thoughts is ‘thank God it wasn’t me’.

Jimmy and I made a conscious decision to speak out and write about what it is to experience the death of a child. While many of our feelings still remain private there is much that we want to be more public about, hence this website. If sharing means we might ease our own burden, it also might just help others overcome their own fears about untimely death, or any death for that matter. We might then feel less isolated,

Claire again: ‘I’ve also learned that it’s reasonable to be curious, to ask questions and not feel that somehow the interest is obtrusive or even unhealthy – and that’s the unexpected bit; I feel that what I’ve learned from this hasn’t made me more anxious about death, but rather the opposite. I’m still very glad it wasn’t me, but I don’t feel guilty about that any more, and I understand now that it doesn’t get easier and you don’t move on, but that shouldn’t stop the friendship as it might bring things you otherwise wouldn’t find.’

Jude’s mum Fiona probably puts on a similar mask to mine. She also wishes people wouldn’t misunderstand her sense of being okay. ‘They shouldn’t decide that I’ve moved on, accepted my loss or (god forbid) replaced my precious son. Instead people should know that it’s possible to choose to be okay whilst at the same time living with a broken heart.’

I am changed and in many ways I’m OK with that. Perhaps it’s the passage of time. My hope is that others will take the risk to find out a bit more about what this change means. As Fiona’s friend Jill Stark has done: ‘I can promise my friend that I will never say “enough now” I will never tire of hearing her talk about Jude and I will continue to remember her crazy-beautiful boy and say his name out loud for as long as I have breath in my body.’

This journey has not been easy for me or for my friends. Many have had to bear witness to my grief and our friendships have been tested but most have survived.

17 Responses

Dear Jane and Jimmy
Hellooo. What a long time it has been and I do hope that someday soon we will get a chance to meet up and catch-up on all these years… so much life and death occurring. I want to write in more detail and will probably send this to your Chalford Hill address – for now reading about Joshua’s death for the first time I am weeping and remembering Jane being very pregnant, his birth in your flat and me holding him days old sitting on your bed. I am so sorry he is gone (and as you say not gone too). I too have had to face terrible grief at the loss of loved ones and it is too painful to really understand or come to terms with and so I know something of this process of trying to accept the unacceptable and finding the deepest places in my mourning. How great is this website! I’ll write more soon but for now love and warm wishes to you both x x Jenny (Holland)

Jenny! …..so sorry to hear that you have also experienced death and loss and my heart goes out to you. Thank you so much for getting in touch after so long and though I am saddened that death is the link that has put us back in touch I am so pleased to hear from you and cant wait to catch up. I remember so well the joyous day you mentioned as if it was yesterday. Please write soon.
Sending love and strength
Jane x

I haven’t been in touch since we met in the pub before Christmas but I’ve been thinking a lot about what we discussed and also about Witness to Grief which I found enormously moving.
I mentioned to you that my mother’s gift to me when she died was the ability to become a softer person, more in touch with my emotions. Before that time, whenever I met a recently bereaved person I would do anything to avoid talking about the loved one that they’d lost. Looking back on it now, I realise that though I justified it at the time by thinking I didn’t want to upset them, the person I really didn’t want to upset was me! I didn’t know what to say and I certainly didn’t want them to cry! How embarrassing would that be! My grandfather once said to me after the death of his beloved wife, “I know I’m not allowed to talk about Nanny”, and he was right! It feels like a double cruelty now – not only to lose someone you loved but also not being allowed to talk about them.
My brother lost his wife to cancer in the summer and he is absolutely bereft. He has warned us not to refer to her or his loss because he cannot bear it, but he has already become much softer and open to emotion. This feels like his wife’s gift to him. His sons, who are being wonderfully supportive to him, have told me how they feel he is changing and becoming more approachable.
He and I had never been at all close but I feel that now the barriers to us having some kind of relationship are beginning to come down. We’ll never be best mates but, as a friend of mine put it, perhaps we can at least be mates.
I’m sorry that I didn’t manage to come on the walk for Josh before Christmas. Did you know that Ben has a framed picture of Josh by his bed? I saw it when I visited Ben’s squat in Berlin and it really stood out as something precious in the very basic surroundings. Ben is currently living in a squatted shed in Bristol and I’m sure the photo of Josh is shining there too.
I’m aware that this is nearly all about me but I just wanted to share some thoughts with you. I hope you don’t mind.
Lots of love, Sarah

So touched by all the comments…..it means a great deal to our whole family to know that our website in memory of Josh is doing its own little bit to help people talk about the more difficult aspects of life……and the time you take to respond is appreciated hugely. A dear local friend also recently bereaved (almost a year ago) said that explaining what its like to lose a child to a non bereaved parent is like trying to describe colours to a blind person……however reading some of the comments above it seems it may just be possible to do this.

Dear Jane,
missing your Joshua especially as January approaches.
Yes it sends a shiver of fear through me and an intimation of the grief you feel ,confronted by the possibility of loss of a child.
We had our first babies Joshua and Danielle within a few weeks of each other. We met at the natural birth class. I still have the treasured photo you took at the hospital(unitended after planning a natural birth!) of me in labour and you almost 8 months pregnant. We have been through so much together over the years, but I have often wondered if our friendship would be strong enough to bridge this cruel loss.

Joshs death has had a profound impact on so many.

You and Jimmy have always been creative enquiring taboo breaking souls and its wonderful to see you turn your eyes and energy to making films and adding your voice to the taboo around death,
with love
Suzanne

With tears in my eyes I yet again acknowledge my deepest respect and even reverence for you dear Jane in your courage and honesty to share your journey of grief with the world.
As has been said here, sadly people do need to be educated about how to approach someone whose child has died, because it is so taboo in our crazy society where we are so immured and cut off from the reality of death in a way no society before ours ever was. In denial in fact. And of course it is every parents greatest fear. It is so important for people to know that it is not just OK but actually wanted and needed to “say their name”. Every time I see a photo of your Josh I am struck by his radiant aliveness. He glows!!! Joshua Joshua Joshua. What a beautiful name. What a beautiful young man. What a tragic tragic loss. But oh how you have loved and honoured him with your sharing and your writing and your website and your work with Compasionate Friends and your wonderful films. I feel privileged to know you and to share this journey (from a distance over here in Australia) and to be counted amongst your friends.

Wonderful piece of writing, Jane…I will share it. And such a lovely photo of you and Josh.
Maybe if more of us were able to “come out” more publicly about the reality of what it is like to be a bereaved parent….rather than feeling we have to hide away and pretend we are OK…..then society’s attitudes/treatment of us would slowly change over time. I am now in my late 50’s and when I came out as a lesbian in my late teens (that was in the 1970’s when being gay was treated as a “psychiatric illness”)….I could never have imagined I would now be in a country where gay people can marry. So….attitudes can change……even if it is a slow process. xxx Posted by Kourosh

Thank you Jane once again for putting into words how we all feel, and thank you Fiona for allowing Jane to share your story. I recently asked friends to give me some of their memories of my son and somehow by asking I gave them permission to ‘say his name’ – the replies have been a lovely gift but reminded me as you say that we have to lead, to let people know what is needed – a truly exhausting process. I am learning 18 months and a bit into this process not to expect much of most people but I am often reminded that a very few really can offer support – they are the special ones and the rest remain on my endangered friends list.

Thank you Jane ( & Jill & Fiona) I think we have all experienced similar reactions from friends- some ( often the unexpected ones) kind of get ‘it’ and have the ability to talk with us about our children but most feel awkward & frightened of upsetting us. I often feel it is up to me to mention Will first, to break the ice, give them permission to talk about Will. No one knows how to start the conversation – too many elephants!
Here, in 21st century UK, children don’t die as far as most people are concerned. We are no longer equipped in how to deal with other people’s grief. Everything now happens so quickly, people get better so we are expected to get over ‘it ‘ & move on. That’s what people don’t get. We learn to live without our children, with a bit of us missing & a heavy heart every day. But we never get over it xxxxx

You write so eloquently and so beautifully about something that is so unbearably painful, I miss my lovely friend who died every day but I lack even in my thoughts the vocabulary to express my grief or to describle the pain that her sudden death caused me. Thank you for helping me to understand my sadness by sharing yours with me.

Thank you Jane (and Jimmy) for continuing to write and film and photograph, reaching out to others, letting them know that our relationship with our children continues for life and we don’t ‘get over it’, but we do keep living. Fiona’s words are so true: ‘people should know that it’s possible to choose to be okay whilst at the same time living with a broken heart’. I have had many people tell me, ‘I don’t know what to say’, to which I always think – and sometimes say out loud – ‘I don’t know what to say either’. Having to explain our grief is exhausting, but I know people need guidance because we live in a culture that can’t deal with the reality of death. Beautiful picture of you and Joshua – it took my breath away xx

Bearing witness to grief, listening, sharing is painful stuff, and in our (stupidly?) busy lives it’s often easier to pass by. Hearing your experiences is a reminder to us all to stop and be aware. I thought I’d write here a metaphor I recently heard that I shared with Jane yesterday, about the experience of traumatic bereavement…. Imagine a person as a beautiful vase – the shock of loss shatters you into a million pieces. Very very slowly you put yourself together again with a lot of glue. From the outside, and from a distance, you look like the same person. But you are not and never will be, and close up the shatter lines are visible. You are still the beautiful vase that you were, but very different – in some many ways more fragile, but in other ways stronger. Xx

Excellent article Jane – thanks for posting. Losing a child is such a terrible loss, I think people are daunted. They don’t know what to say, so they say nothing. They think that there is always better, closer friends to mention your child to you – so nobody mentions them. It is the little things that really make a difference. Hope everyone can make 5 minutes to read this xx”

Thank you Jane for that article about little Jude on the website. Its really helpful to hear your reflections on how it feels to have lost a child and how the reactions of other people are so affecting. I totally agree that you shouldn’t have to educate or guide people around your new reality, but the fact is that you do a great job of it, and in our culture, we need somebody educating us by talking about death. It must be totally draining to have to even think about other people’s feelings but you have enabled your friends to be more open, to dare to ask and given us permission to be curious. I thank you for that and for your ongoing compassion despite your pain.
p.s I love Josh’s tank top in the photo!

Thank you for including Jude on your website.
I think it’s so important to let people know that as bereaved parents, hearing other people talk about our children and ‘saying their name’ lets us know that they still think of them.
Jude died the day before Christmas Eve and the following year we got some very insensitive cards, wishing us “the best Christmas ever”. We also got some lovely ones where Jude was mentioned. It was so simple but it meant the world to me. I’ll always hold those special friends dear.
I love the photograph of you and Josh, it just cries out how loved he was then and is now.

Thank you Fiona for letting me write about you and your beautiful Jude. Couldn’t agree with you more about Christmas cards. You are right when you say how lovely it is when people mention our child’s name at this particularly sad time of the year. We have been involved in a Christmas Campaign called Say Their Name at Christmas which links in with the Film we made for The Compassionate Friends called Say Their Name and encourages people not to be afraid to mention our children’s names in Christmas cards and generally at this particularly hard time of the year for all bereaved parents.